Share your story
If you would like to contribute your own story or simply just some thoughts that you think may help other people, please email us and we would be delighted to feature you.
All we need is:
- a photograph in jpeg format
- your name (you can give just your first name if you prefer) and whether you are a patient, carer, relative or friend
- the type of tumour that you or your loved one has, the date it was diagnosed and a very brief outline of any treatment received
- what has enabled you to cope, and/or given you inspiration?
- what advice would you give to others affected by low-grade gliomas?
- do you have a particular quote, or an image, which gives you hope?
In this section, people share their stories about living with a low-grade glioma in order to pass their experiences, hope, and sources of inspiration on to you.
Andy - diagnosed October 2008
Grade 2 oligoastrocytoma
"My name is Andy Wild and I have a grade 2 Oligoastrocytoma. After my diagnosis I wanted to try something that I had never done before - so I decided to paint. Through a free art class at CancerCare I was given the opportunity to put down in paint, my view, my feelings about the world - which meant some sadness and a lot of joy. In an exhibition I want to share my journey, from my first painting of a bird, to where I have travelled to now. It is a visual journey of how you can express your life in paint - from how you see things to how you feel about things. We can all paint, you just have to let go. Take a look at the exhibition, I hope you get something out of it. Cheers."
David - diagnosed June 2008
Grade 2 oligoastrocytoma
"A few years before my brain tumor was discovered, I had been diagnosed with chronic sinus disease. This came with regular sinus infections (one per month) and headaches. Until then, I had usually only gotten one headache per year, if that, so headaches weren't something I was used to. I had sinus surgery in September 2007 and continued to experience headaches after that, which were then being treated as migraines. I just attributed them to my sinus problem.
One night in June of 2008, I took migraine medication and went to bed. I had difficulty sleeping that night and woke up several times in the night with a horrendous headache and tingling on the left side of my body (face, arm, and leg). I knew something wasn't right, so that morning, I had my wife take me to the ER, where they ran CT and MRI scans. They saw some kind of “mass” in my brain and figured I'd had a stroke. They rushed me to another hospital that specializes in strokes where the neurosurgeon on duty was baffled that a 38-year old male, who seemed otherwise healthy, could suffer from a stroke.
Over the next several days, many tests were ran and it was determined that it was not bleeding or a stroke. The next step was to have a biopsy done to determine what the mass was. I agreed to have it done, and on June 5th, 2008, I was told I had a low grade glioma (a grade 2 astrocytoma). Not having any idea what this was at the time, my family and I just cried. The neurosurgeon there said the tumor was about the size of a lemon and deemed it inoperable because it was attached to the area that controls movement on the left side of my body. I was released from the hospital wondering 'what now,' so I turned to the Internet for help. Bad decision. That was surely a way to get freaked out immediately.
Luckily, I worked for a medical device company at the time that was in the prostate and kidney cancer killing business. We had customers all over the country who worked at the premiere hospitals and research institutions. Some of the executives of my company were able to get my charts and records in to the hands of some of the most well-known and respected brain surgeons and neuro-oncologists in the country. After months of email dialog with those doctors and meeting the top doctors in California, I decided that surgery would be the best option for me. Based on where the tumor was located, I was given a 1 to 3% chance of being permanently disabled on the left side of my body. That meant a 97 to 99% chance that wasn't going to happen. I chose to look and focus on that number and not the smaller number. That combined with the fact that if the surgeon got the cells out that would become more radical and malignant later on in life, this would greatly increase my prognosis and chance for long-term survival. That was more important to me than maybe not being able to move my left arm or leg ever again, especially since my wife had given birth to twin girls in Dec of 2007, and combined with our 5-year son, I certainly wanted to be around to see them graduate, get married, become famous musicians, etc. This surgery would provide a 50% chance of that, so for me, I had to take the risk.
I had brain surgery by Dr. Linda Liau at UCLA on November 10, 2008. After the surgery, I was not able to move the left side of my body, but I knew there was no way I would be in that 1 to 3% group. The number was just too low. The odds were on my side that I would regain movement. After a few days, I was able to move my leg and started walking around the ICU unit. Lifting my arm was possible, but not easy. It felt like I was trying to lift a 100-lb dumbbell, and yet, it was just my arm (something I had taken for granted all those years being able to move easily without any thought ). Every move I made required intense concentration. One week post-surgery, I was transported to a hospital closer to home where I underwent one month of intense in-patient physical, occupational, and speech therapy. Everything seemed to be progressing well, so I was released on Dec 8, 2008, just in time for the girls' first birthday. I've been home for a little over a year now, and while the fine motor skills in my left hand aren't where they were pre-surgery, I can walk, talk, use my arm, and most importantly, I'm alive and feel good. Even a year later, things are still improving.
Needless to say, it's been an interesting year. And of course, while learning that you have a low grade malignant brain tumor is terrifying, I've never once faltered from the idea that I'm going to be okay and will probably live long enough to die from some other cause. I think this comes from the strong support of my friends and family, and my faith. I have made peace with the fact that I may never play the guitar or drums again, but I'm okay with it if I get to see my children grow up. And so far, it looks like that will be the case!
To anyone else going through similar trials and tribulations, I would say hang in there and keep your head up because medicine and technology have come a long way and continue to improve. My nuero-oncologist at UCLA is certain there will be a cure for this someday. Have hope and get lots of opinions!"
Debbie - diagnosed March 2007
Grade 2 astrocytoma
Debbie is a daughter, sister, wife and, most importantly, mother of two gorgeous boys – Shamsie, seven years old, and Yusuf, almost one, born four years after her diagnosis with a low grade glioma in 2007. Debbie lives with physical disability, anxiety about her seizures and the knowledge the chances are that her low grade tumour will more than likely develop into a malignant brain tumour over time.
Here is Debbie's story…
“The tumour reminds me to live my life to the fullest, but I have had to fight for every bit of support I have. If I hadn't been so tenacious in my fight I would have been left rocking in a room. I worry what happens to low grade patients who don't have the physical strength to fight or the resources to find support and hope that my story helps other people gain greater understanding of the issues of living with a low grade tumour, as well as more awareness of brain tumours generally.”
"27th March 2007 was a normal day; I'd made dinner, put my son to bed and was catching up on some work. At 11pm I fell from the top of the stairs. My husband found me convulsing at the bottom of the stairs, with my face sliced from my eye to my mouth and blood everywhere (a picture that still stays etched on his memory). I was taken to A&E where I had another major seizure and thought I'd had a heart attack and was dying. I was sedated and everything was a blur until I ‘woke up' terrified and alone in a scanner. I underwent painful facial surgery under local anaesthetic (due to dangers of general anaesthetic). I thought: “Well it can't get any worse than this. At least I'm still here.”
Little did I know what was to follow? I was told I had a brain tumour, they didn't know what type or how aggressive and I would have to go to a neurological hospital for a biopsy. My little boy wouldn't come near me for a cuddle - my face looked so awful and swollen. I saw in my family, the look of confusion, despair and helplessness. I was heart-broken... but here and alive! Whilst I waited four days to be transferred, I continued to have multiple seizures a day. No emotional or practical support was offered to us; quite the opposite. I was on a ward feeling embarrassed, fitting and biting my tongue in front of other people. Only one nurse took time with me, for which I owe her eternal debt. She found out I stayed conscious during fits (I didn't know this wasn't ‘normal' and it was related to my tumour). She held my hand whilst I fitted before sleeping. I was terrified about falling asleep because I knew I had to have a seizure before I could sleep.
When my seizures began to be better controlled and my tumour was confirmed, I reflected and realised that being diagnosed with a grade II astrocytoma was strangely something of a dichotomy: personal relief that I was alive - at the same time scared and bewildered as to where to go, what to do and how to do it…. I had always been the pillar of support and problem- solver in our family and now I had a problem I couldn't solve. It really hurt to see my family so lost and powerless too, as well as watching my husband's face as he pretended to be OK, whilst continuing to see my seizures replayed in his nightmares as he slept.
When I came home, reality soon set in; I was overwhelmed with so many thoughts and feelings. I didn't know if I had a future and panicked about how best to do all the things I've ever wanted to do with my family - time was slipping through my fingers. I started writing lists of things to do, how to make my son happy, planning for his future without me. Still there was no offer of emotional help or support - I was told to just ‘get on with things' and they would do scans every 6 months. Some of my friends with children found it difficult and I lost contact with them just when I needed help.
I tried to figure out how best to get on with my life - a life I no longer recognised. I could no longer drive and went through a period of assessment of medication levels to find the best way of controlling the big seizures I was having. I tried to help my son understand what was happening. He found his own way of describing it: “Mummy has wobble wobbles because of the stone in her head”. It still doesn't stop my heart breaking each time I fit (and remain paralysed for 30 minutes after the seizure). One time I saw and heard my son crying behind the curtains as I convulsed, banging my head on the wooden floor, helpless to get to him and willing myself not to black out.
I was soon to discover exactly what my long term diagnosis of a low grade glioma entailed – practically nothing in the way of support - and I soon realised just how much physical and emotional support I needed. I have complete phobia about the prospect of having a seizure and developed other phobias of stairs and trains (I had a seizure with my feet under a train at the platform). I worried about the effect it was having on my son. At the age of four he had to ring for an ambulance when I had a seizure and then let the paramedics in all by himself.
I was originally told I had a slow growing grade II tumour - we took this at face value and it was something certain in our very uncertain lives. However, a year later, I was told (by another consultant) that it could ‘transform' into a more aggressive tumour at any time. It was like being given my diagnosis all over again. My life was in limbo between scans and I missed out on Macmillan oncology support because I did not yet have aggressive brain cancer. There were days when I couldn't get out of bed because I was so afraid I would have a breakdown when I saw my children. I had no outside support. I am such a strong woman, so why did I have to resort to ringing the Samaritans in secret at two in the morning? I saw my GP and asked if I could be referred to a counsellor, but was dismissed with the words: “you're great, you can cope with this!” It took so much courage to ask for that help, it was a real knock back.
I am shunned by some hospices because I don't need palliative care for my brain cancer, yet I suffer with chronic stress, physical disability, which worsens month by month and will continue to do so for what is obviously an indefinite period - I just don't know when the axe is going to fall.
I have had to ask for first aid training for my children - there has been no support forthcoming for them. Shamsie has had to cope (admirably) with my seizures and physical limitations since he was so little and now he has to take his baby brother Yusuf away from me when I fit. I had to arrange for St John's Ambulance to do a one-to-one course for them to ensure their safety.
I worry about my husband too - it is incredibly traumatic for him to be constantly worrying about me to the extent that every time he hears a bang he runs upstairs in case it's me having a seizure. He courageously hides a whole torment of emotions, but sometimes I can tell when he is stressed because, for example, he disappears to the allotment and starts digging up potatoes which don't yet need digging.
There is a general perception that low grade tumours are non-cancerous, yet, as a patient, I am constantly being told to look out for side effects which could indicate that the tumour is becoming malignant. These are, however, often the same as the side effects of anti-epileptic drugs – something I discovered, but was not told. There is the never-ending anxiety between MRI scans (the watch and wait). I used not to get support following the scans themselves which are horrid and last a good hour. I have learned to become very vocal and to ask for the help I need – very difficult when I'm used to being so independent. For example, I always take my music with me and ask for the radiographer to talk to me throughout the scan telling me how long I have to go – it helps me see an end to it. I've had really bad experiences in the past where I've been trapped in the machine with a vertigo episode with no-one speaking to me for an hour.
Added to this, we now have to come to terms with relying on benefits because I'm no longer able to do the job I loved as a project manager. I've worked since I was 16, having always worked for the government, in retail and banks, but now, ironically, I am fighting with some impersonal creditors (Macmillan have been a great help). It is lucky we don't own our own home because by now they would have taken it from us. To go through this battle on top of my tumour seems so unfair when I just want to be able to focus on doing things with my children.
I know I am not alone in my worries when I go on the forum at www.astrofund.org.uk (an organisation which supports low grade gliomas and raises funds for low grade glioma research, and is a member of the umbrella charity Brain Tumour Research). There are lots of people there who suffer in very similar ways. We tend to be young men and women and we worry about our families - the people who will eventually be left behind. We are the hidden, silent people in the cancer world. Within the cancer community I feel like a fraud. There are little or no effective treatments for us – we are just told to watch and wait.
Six months into my pregnancy with my second son, Yusuf (born in March 2011), a scan revealed that the growth rate of my tumour had significantly increased and I was advised to have it debulked. I am on five different types of anti-epileptic drugs (and on almost maximum doses of all five) so was constantly monitored throughout my whole pregnancy.
My neurosurgeon recommended someone for a second opinion. We were pleasantly amazed, having been accustomed for the last five years to being told what needs to be done, to be asked this time: “What is it that you want?” We eventually decided to wait for my body to recover from my pregnancy and complex birth (I had a number of blood transfusions when Yusuf was born), as well as for the results of my next scan (in March 2012). I am set to undergo an awake craniotomy soon as my physical functions are worsening. This procedure will remove as much of the tumour as is possible whilst I remain fully conscious. We hope this will prolong my life.
Fortunately, I have always seemed to find just what I needed when I was down and now consider myself to be in a better place mentally. I now have a great neurological team at Sheffield looking after me, community physio and occupational therapy support and I have managed to find a brilliant counsellor to help me with some of my phobias and anxieties (through Brain Tumour Research Across Yorkshire, another member charity of Brain Tumour Research). I thank God each day that it's me and not one of my children who has the tumour. How do you cope with a child with this?
I have also found great comfort from the wonderful people at the Penny Brohn Cancer Centre in Bristol who have shown me the benefit of painting, writing down my thoughts, poetry, music and meditation. I have been on a number of retreats they have organised, which have inspired me. For the first time I didn't feel alone and I gave myself permission to think about myself (something which anyone with a young family will know is difficult at the best of times).
I have also learnt that you can change your neuro-centre if you are not getting what best suits you. Trust in your consultants is so important on such a long uncertain journey. Due to moving around the UK for work, I had the opportunity to experience four different neurosurgeons - finally I have found one I feel at home with.
I thank my brain tumour for eventually making me stop work and spend valuable time with my children. The funny thing about my tumour is that it makes me appreciate every single moment I have. I don't put things off any more - I do things now. The tumour reminds me to live my life, form lovely memories with my children and just try to find something to smile about every day.
My regret is that I have had to spend a lot of valuable time finding and then fighting for every bit of support I have. If I hadn't asked so many questions and been so tenacious in my fight I would have been left rocking in a room. I worry what happens to low grade patients who don't have the physical strength to fight or the resources to find support and hope that my story helps other people gain greater understanding of the issues of living with a low grade tumour, as well as more awareness of brain tumours generally."
Debbie Selam - February 2012
Duncan - diagnosed June 2000
Low grade glioma
Jamie came to dinner last Wednesday. It was fun. Wine was drunk and we reminisced on old times and put some plans together for the year that is coming. Jamie is a good friend of one of my oldest friends. He is a very normal person, similar to many of my friends. People, who were never motivated by that on offer in academic or sporting life, but found that this hole could easily be filled in the British outdoors. We were lucky indoor climbing did not exist so we had to learn in the UK outdoors. A country with great mountains and a wide variety of rocks types that ensure that climbing is constantly interesting. For that reason most of the people I met and became friends with in my twenties are still friends and still visit the outdoors. Many have young kids so now use bikes or walk or visit small cliffs close to where they live, in the few hours they have free and it is not raining.
So yesterday we reminisced. We also debated the other things we have in common, politics with a small p, family life, the rise of tics in the Scottish countryside, and the choices one has to make re travelling for work and living with global warming. Inevitably the conversation would switch to the main thing we have in common. We are both disabled. I always remember many years ago walking up Ben Wyvis on a friends stag weekend. My disabled friend walks remarkably well, he has both lower legs and both hands missing from frostbite in an Alpine accident in 1999 and walks very well on his prosthetic legs. The stag do was one of his first days out with his old friends and what made him happy was he was part of the group and needed no help. In fact my friend Paul, who was still smoking at the time, commented that he could not moan at the speed we were walking because Jamie was keeping up with ease. He was slightly slower on the way down but we were so comfortable with him that we did not notice that he had dropped a wee way behind us. Alas one of his legs was unfastening and he had to ask a walker do tighten it up. Was he angry? No the opposite to be treated as a normal person was a compliment. Now he lectures, not just on the accident but on how he has reverted to a fuller life since the accident and this is used as an inspiration for me and I believe for many others.
One of the ways that Jamie really inspires me is not by climbing big mountains or gaining fame as a disabled athlete but overcoming a serious disability to raise a family and live a full and normal life. While we were passing the time on Wednesday evening the remains from Halloween were enjoyed. By this I mean that I had picked up large tin of Quality Street on Sunday, just in case the local youths chose to play trick or treat on our household. Not sure why, but we were not a popular trick or treat target, maybe because we had been too lazy to light a carved pumpkin, or maybe now kids only go to family friends. Anyway, back to the sweets, so here we are sitting by the fire with the Quality Street enticing us and Jamie. I looked at Jacqui, my wife, should we offer help to get the lid off and unwrap a sweet? We watched as Jamie was determined to do it himself, despite a couple of failed attempts, he removed the lid, unwrapped and the chocolate of his choice. Wow, not an easy task for someone with no hands.
I had become disabled at more or less the same time as Jamie. Although my diagnosis required modern technology and did not happen until June 2000, after all I am a man so happy to ignore migraines and visual disturbances. I too have continued pretty much a normal life despite my diagnosis. Jamie invited me to be in his team for two races in the last couple of years for disabled runners. Both were great events and I was inspired by the runners with many variations in their disability, but all with an enthusiasm for life.
The second event we did as a disabled team was the Scottish Islands Peak Race. A great event and one of the toughest challenges I have ever tried. I do not know if I was lucky as there was no wind which meant that with me as a slow runner time was a pressure and in the end we had to pull out. The look on Jamie's face mirrored my own. Massive disappointment as failure was a thing we tried to keep off our agenda. The race was one of the best things I have ever done, and that is despite the failure. It is strange what we talked about most, a tiny incident after the race when we visited a small island by dinghy. I was bought up on the sea, so boats were a thing I was pretty chilled about. I was a Scout canoe instructor at the age of fourteen; the rules were different in those days. So what happened? I went round in circles, much to the amusement, in a pleasant and positive way, of my team mates. I was surprised and horrified. By coincidence I went canoeing, also for the first time in 30 odd years, the following weekend and something similar happened. I had been doing a lot of climbing and was following a friend up a route that had a move I was not used to. I cruised the harder moves but was halted by a short section that required a type of climbing I had not tried for several years.
This explains what my Low Grade Glioma does more clearly then anything else I have ever done. It tells me that the brain power behind most physical activity no longer exists. Luckily, being a human, the unused bits of the brain jump in and fill that gap. But like a like a three year old, it has to be taught how to do it. What is clear is that hitting a task that requires a different and new solution is a problem. Jamie and I laughed at this. Many of his friends who have also had serious climbing accidents have learnt to overcome their disability and reverted to outdoor activities. He smiled and told me all encountered unexpected activities that caused them maximum difficulty. What I was experiencing is a different version of this.
Like Jamie and his friends, these issues can be overcome.
You can find me through the online support group
Grace - diagnosed December 2006
Grade 2 oligodendroglioma, surgery 2009
"I'm going to start right from the beginning, so bear with me because I might go on a little! The evening of 2nd December 2006, 13 days after I returned from a year travelling, out of the blue, I found I could not finish my sentences while chatting to my sister. We laughed but within a few minutes I knew something didn't feel right. Anyway, my dad dragged us all to get a Chinese takeaway and by the time we got there I became increasingly confused and was starting to panic. My Dad took me home, while leaving my step mum at the shop waiting for the food. He rang NHS direct and they told him to get me straight to hospital. Within seconds of my Dad's wife getting in the car, I starting fitting. It was so bad they had to pull over and call an ambulance. The next thing I know, it's the next day and I wake up in intensive care. Apparently they weren't sure I was going to make it, I had four massive seizures which were only stopped by putting me out. Anyway, soon as I was semi-conscious and they could take the tubes out they hurried me off for an MRI. When I was later told I had a brain tumour I was expecting them to tell me I had malarial! So wrong...
I was transferred to the nearest neurological centre at Queens Hospital in Romford, Essex. The doctors spent the next week deciding whether or not to do a biopsy. Eventually it was decided to go for the 'watch and wait' method, as they diagnosed a suspected low grade tumour. The next three months were a bit tough, but got back into working and a held a charity event. My next scan was fine, no growth and they didnt expect it to change for a long time.
I was on Phenytoin for two years with no seizures and no growth. Then I changed to Lamotrogine and in March 2009 unfortunately I had five serious seizures while I was at work and ended up in hospital for more than a week. That was really hard. I was confused for most of the time and was so scared. I even spent most of my 26th birthday unconscious, I was bad that day. When the confusion passed eventually a scan showed my tumour had not grown and I could go home. Sadly, my confidence had disappeared.
Everything was fine again until August when it happened again. This time I recovered a bit quicker and only spent a few days in hospital and went back for another scan a few weeks later. I had decided to transfer my care to Charing Cross as I had now moved to West London since my diagnosis. It took ages for my files to go over and for the comparison to be made... in the time being, I gained a great neurologist (Mr Michael R Johnson) who is managing my seizures regularly and my consultant neurosurgeon Mr Kevin O'Neill.
Then, in late September, Mr O'Neill told me they saw a change in my previous scans and after discussing me in their weekly meeting, it was decided to operate; a partial resection not a biopsy. It never occurred me to question my specialists, I trust them completely and have always filled me with confidence.
So, on 17th November 2009 I had a five hour awake craniotomy where Mr O'Neill and his fabulous team took 80/85% of my tumour out. They couldn't go any further due to the location of the tumour (left parietal lobe) and the risk to my speech and movement. Amazingly, I was out of hospital within four days and was back to work after around two and half weeks. The diagnosis? A grade II Oligodendroglioma. For now I will not need radiotherapy or chemo.
I had 49 staples, greasy hair and steroids that made me blow up, but I'm getting back to normal. It has, however, left me with difficulty in finding words and speaking (i'm told it's not as noticeable as I feel it is). It's a bit like having a stutter I suppose. It's very frustrating as it is the opposite to how I was before, but I know it could have been worse. I'm learning to get on with it and finding ways of slowing down and saying the right words correctly. I always get there eventually!
Unfortunately I have suffered two seizures since my surgery but I recovered very quickly and they were milder than before. I am grateful for that. My neurologist has added Keppra to my Lamatrogine and we're confident that we will find the right balance so I can get my driving license back, not to mention finally getting rid of the horrible seizure anxiety!
I had my 6 month scan in June 2010 and am pleased to report that everything is stable. My surgeons are happy and am hoping there will be little or no change for sometime...if never. I am realistic that things might not always be as they are now, but that's ok for me right now. I've experienced various emotional stages; from wanting to know as much as I can about my condition, to perhaps denial. I like to think of it as just getting on with my life, with the no intention of letting it take over my thoughts and my actions, for as long as I can.
Anyway, sorry its soooo long.I just wanted to share everything that has happened to me. I so hope this helps a little and maybe reassure you that things will be ok. Just be positive and let people support you. If everything else fails....Laugh!!
P.S. Being awake for surgery is actually really interesting! I wish I remember more of it than I do. I'm quite proud!!!"
You can find me through the online support group
Jane - diagnosed December 2008
Low grade glioma
"After being diagnosed with a low-grade brain tumour in Dec 2008 my life has changed dramatically in a lot of ways, some expected and some that have surprised me! Just wanna share some of these bits. It's up to you if you wanna have a peak at my blog."
Jeany - diagnosed October 2008
Low grade glioma
"My name is Jeany Brazier and I am 43 years old. I first noticed symptoms of numbness and tingling in my rightarm in Sept 2007 which had progressed to my right leg by the December, (a skiing trip in Feb had me falling over all the time due to my numb foot, well that's my excuse and I'm sticking to it!).
I had an MRI in March 2008 which showed a lesion and I wassent away for 6 months during which time I looked up my results online as I had access through my job as a drug and alcohol therapist (urine screens for our heroin users), a bit cheeky but at this point I was desperate to know what I was dealing with, (my younger sister had recently been diagnosed with early onset Parkinsons Disease). This was the worst time, my symptoms became quite bad, with lots of aches and 'fizzing' down my whole right side, the tingling was pretty much constant which meant it was very difficult to switch off. I worked out for myself that I was probably looking at a low grade tumour and a further scan in September 2008 showed no change and a referral to a neurosurgeon who suggested biopsy.
This happened in October 2008 and the results were 'highly suggestive' of a diffuse low grade glioma, but ultimately non-diagnostic. This was very frustrating for me and my partner and others seemed convinced it was all a big mistake, I felt like maybe I was making a fuss for nothing but could not help feeling totally freaked out and secretly planning my funeral! I have since accepted that those that love me may not be able to deal with the news and I try and allow them to deal with it in their own way, after initially feeling quite angry at them for not understanding. Really, how can they?
After the biopsy my memory was poorer and the fatigue was awful. When I realised I would not be able to drive for a year, (having just bought a new mini as a real indulgence for the first time in my life!), I felt devastated and frankly, disabled. Over the next few months I took things much easier, I had no choice really, and began to review my life goals. I had known for a while that my job was too stressful and when I found out my eldest daughter was expecting a baby, I knew I wanted to shift the pace down a gear. I began to say 'no' to other's demands, both physical and emotional, and prioritised my health and well being. I guess I thought if my time on earth is limited, I want to enjoy it and not feel stressed and tired all the time. This led quickly to a much better quality of life. Since then I have cut my work hours and changed organisations, which although hard, looks to have been beneficial. I can still feel useful without burning out. It's taken a lot of soul searching and challenging myself, but I can honestly say this has made my life better, I spend more time with those I love and less doing things that drain me.
I had 4 sessions of hypnotherapy in September 2009 which were incredibly helpful. I no longer think about 'being ill' but just get on with my life. My beautiful grandson Maxi was born in October 2009 and he has helped me keep perspective. My latest MRI in Dec 2009 was still stable and I have happily moved on to annual scans. I no longer feel the need to read all the research and trust my consultant Dr Rees to advise me regarding any treatment. It really helped me when Katie from Astro Brain Tumour Fund encouraged me to seek a second opinion, and I took some control by choosing which hospital/consultant I wanted my care to be with. I have found the National Hospital for Neurology & Neurosurgery in London really excellent. Knowing they are at the forefront of research has helped develop my confidence in their care.My tumour would be very difficult to operate because of its position and I am very happy to leave well alone as my quality of life is good. My right side gets very stiff, but monthly massage and daily walks help with this. I feel very fortunate not to get seizures and know things could be much worse. I think it's all about perspective and it feels good to look at this positively:
' ..two men look out from behind the same bars, one sees the mud and one sees the stars.'"
I'm a member of the online support group if you'd like to get in touch with myself or other people going through a similar situation.
Jim - diagnosed February 2005
Grade 2 glioma, surgery 2006 and 2009, radiotherapy
"I was having strange experiences whilst on my scooter (a Vespa)...after overtaking something, I couldn't figure out why there was still yet another car in front of me. I spoke to my colleagues (a bunch of Nurse Lecturers..for what they're worth!!) they said I was having panic attacks. One Sunday morning my daughter found me having a grand mal seizure in the living room, I'd been pottering in my underpants and T-shirt (my lazy PJ's). It was all very confusing once I came round, I did a quick checklist of things I could have, being a new diabetic was my favourite option....I never considered having a brain tumour. The first I knew that I had a tumour, I heard a student nurse mention it to someone else, prior to the news being broken to me.
I was diagnosed with Grade 2 in February 2005, after a biopsy and brachytherapy, my surgeon was soon sacked, nothing to do with me! Had a craniotomy, and partial resection in August 2006. Did the London Marathon April 2007 for Astro Brain Tumour Fund.
Been back at work lecturing, losing your driving licence is difficult, small sacrifice really in the scheme of things. Took my motorbike test, hardest thing I've ever done, took hand gliding lessons (not a joke), and done over 50 stand-up comedy gigs in the North and Edinburgh... god I'm funny (stage name ‘Jam Malcolm').
Started fitting, never fitted before (had 16 Partial seizures in the space of 7 months, 1st one was on my motorbike in Edinburgh after a gig, managed to stay on it) in August 2008.
Further craniotomy and resection on 25th August 2009, due to some re-growth (start radiotherapy November 2009). It remains a grade 2, thought it would be worse.
Ran a half marathon on 4th October 2009 (40 days after the op) in aid of Astro Brain Tumour Fund, only raised a little as I didn't have the opportunity to promote myself and didn't think I'd do it with only 2 training runs the week leading up to it. Did the run in 1 hour 57 minutes, see pic, it was the sprint on the final straight.
Yes I've been tired, tablet side effects get me big time (now on Keppra and Carbamazepine) and ‘things' do get me down, I'm usually pretty upbeat for a naturally miserable sod. Cry at anything now....sad songs, injured kids and old men on the tele. Just got to get on with stuff...not at the dolphin swimming stage...never will be, fish are for eating, not kissing."
"I do realise that dolphins aren't fishes, and that they are mammals (that have sex for fun, other than just an instinct, like me!)
It's been 6 months or so since my last update...Radiotherapy went ok, apart from the waiting (in the waiting room). I had periods of feeling 'clearer' and sometimes I was 'sad', no difficulties really. I went back to work a week into the 6 week treatment process.
Hair was not a problem for the first 3 weeks, then I saw my consultant, and he reassured me that on the 3rd week I would lose my hair, he's a nice bloke really, but balding men have no concept of what it is like to have hair!
Then one day I washed my hair (did it over the bath) all my hair fell out, when I say all I mean from going from Liam Gallagher too Clive Anderson. It wasn't nice, to lose it within a few minutes, was like having my personality ripped from me, and given a new persona (the one who wears hats indoors, and get starred at in the shops / gym). I really didn't recognise myself in the mirror, got very touchy when someone tried to take a photo (untagged myself on Facebook, that bad ...really!). Now, I still have a bizarre head, hair on the left and back of my head, and bum fluff on the right...it's having a go. I'd like it back, please.
I hear next week if all that hair loss was worth it, MRI results are due....
Being a lecturer, I have to confront classes of 60 plus on most days, my self confidence has taken a battering, due to the hair issue, and not driving for a year (I know what you're saying, 'If that's his only problem, then he's got it easy'). People see me and say I'm coping well, and they like my hair, I know they are just trying to be nice.
This has taught me a lesson, people make judgements in the way someone looks and acts, but there is a lot more to someone than aesthetic, as a nurse I have always been conscious in how people perceive my 'nonverbal's'. Being on the receiving end is quite unnerving.
Now, I'm at work, memory for the odd word is always an issue. Physically I'm fine, play Tennis and Badminton (to a decent standard, not beach holiday badminton!). Doing the Manchester 10k in May 2010, half marathon in October, and applied to do the London Marathon (again), previously I have been turned down 2001 / 2002 / 2006 / 2008 / 2009 / 2010 (did it 2000 and 2007).
Stand-up wise, I'm in comedy wilderness, did two gigs last year, scared to go back to it, waiting for hair, that's when I'll do it! Started to fill in my application form to attempt to get my driving licence back, always a pain, it's a very slow process, not sure if radiotherapy will affect me getting it back in August 2010.
Now that was up-beat wasn't it? I was asked for my thoughts and an up-date. Must put a load of washing in (job for the day, Rock n Roll), thanks for reading."
Karan - diagnosed June 2009
Grade 2 astrocytoma, surgery 2009
"My name is Karan Waller and on June 8th 2009 I collapsed at home whilst on my own with my two daughters then aged 9 months and 3 years old. I had felt ill all day but had taken some headache tablets then returned home from work as normal but came around in the living room to my youngest daughter crying and my 3 year old lying on top of me. I made my way to my bedroom with my children and rang my husband who rushed home. At the time I never thought one thing about anything being ill but knew I did not feel normal so Ianrang the doctors and they said that I couldgo to see them. My mother then came to collect me and took me up to the out of hours clinic where the doctor there told me it would be best if I went to the hospital just to be checked out. Once at the hospital they placed me in a bed whilst I still felt out of it and then during the night theygave me an MRI Scan. The next morning I woke up feeling back to normal and was wondering why I wasn't able to go home. As my husband arrived and the doctor came to see us we were both in absolute shock to be told that they had found a brain tumour, at this stage I asked if I could see the image as I really did not believe it. The doctor took me straight into his office and there on the screen was the image of my tumour inside my brain which was very large for most tumours that are found.
I was kept in the hospital for a few days but after being placed on medication was sent home and was booked to go into the Walton Centre for neurology and neurosurgery. I met with my consultant Ms Burns who has been tremendous throughout who advised me on several options to try and remove the tumour, I was then given the option to choose my date for my operation but due to the fact that I had a friend who was getting married in early October and that Idid not want to ruin anything for her hen do and her actual wedding I decided it would be best if I had the operation after the wedding. I was given a date therefore at the end of Oct. Since the operation has taken place, I still have two parts of the tumour left in my brain and now after my operation has taken placethey have found that mytumourhas been diagnosed as 'Left Posterior, WHO grade 2 astrocytoma'. So my scary news now is that at a grade 2 there is a risk of it transforming to a higher grade... :( I struggled incredibly when I came out of hospital as I had lost a lot of my memory, particularly of my children and everything felt strange like I was all confused, I have lost some of my sight in the top of my eyes but it doesn't affect me seeing properly but bright lights can affect me and anything that is mainly above my right eye. I have also not been allowed to drive which has affected me incredibly. So all in all its been one massive journey. Since then though I am getting used to bright lights and have been having speech therapy to help with my memory… although I am still terrible when I am tired with speaking and cannot remember a lot of peoples names... (my sisters have found this funny though and it has turned into a little bit of a joke with them guessing everything I am trying to talk about sometimes.. LOL)
I have recently returned to work and that has made me feel so much better about everything, that along with the support from all my family, my friends, and my mum has been incredible and so has my husband Ian who I just don't know what I would have done without. I started jogging before I went into hospital and it started just as a getting fit exercise but then my sister suggested the runcorn/widnes bridge run and for some strange reason I agreed!! I have had gallstones for over a year now and was waiting for my operation to have them removed (as they could not be done until my tumour was operated on) so when I went into the hospital theconsultant agreed to wait until after Easter Sunday so I can at least do the five mile run.. WHICH at the start was a goal just for me, but now after my husbands mother said she wanted to do something and asked if she could sort the fundraising out it has turned into a goal that has to be met because it now means something to raise money for the Astro Brain Tumour Fund and also for the Walton Centre that my older sister is fundraising for.
Life is so strange at the moment as some days I find it easy but others I find it hard because of the scary side of knowing that one day anything could happen, so at the moment I am just trying to take each day as it comes. One thing is for sure though, life is far too short to worry about things and that is one of the things that I have got to try and learn to stop doing... I had my most recent MRI scan on the 12th March and will get my results in a month so fingers crossed that there is nothing going on in there ... If all is doing good I am sure I will start feeling a little more at ease about everything :)…One thing is for sure though, I won't give anything up without a fight…my two girls are too young for me to be going anywhere yet :)"
Laura - diagnosed April 2013
Low grade Astrocytoma
"I had been a headache sufferer my whole teenage life. I assumed it was puberty or the wrong food that I had been eating. Eventually, the headaches got so bad, I started taking pain relief pills every day for about a month. After seeing my GP three times in six days, I was referred to the hospital. On 10th April 2013, after numerous scans, I got diagnosed with a brain tumour. A few days later, I spoke to a surgeon, who suggested the best option was surgery. I agreed.
Returning home, I told very few people, except very close family and friends, andon the 22nd April I had my pre-op! I passed out while giving blood (great start). On Wednesday 24th April, I was at hospital for 8am. I was terrified! Everything was checked over and I was told I would be collected for General Anesthetic after 9am. I was first on the list. The nurse came, took me to GA and four or five hours later I woke up. The first people I saw were my partner and my family. I felt so relieved to see people I knew and in some way know that I was okay. I didn't look at myself for 3 days - I was too scared. I got discharged on Monday 29th April (my 22nd birthday).
It was hard adjusting when being back at the house as during surgery cells were lost which has caused me to have lost my left peripheral vision.
I went back three weeks later and they told me exactly what kind of tumour I have - pilocyticastrocytoma, low-grade. I have since been told that there is no residual tumour left, but I will be scanned every six months so they can keep a close eye on me."
Laura - diagnosed December 2010
Grade 2 oligodendroglioma, changing to grade 4, radiotherapy, antineoplaston therapy
"My name is Laura Hymas, I am 25 and live in Kent with my fiance Ben, 31 and our young son Jacob, who is 2 years old. When I first met Ben four years ago I knew instantly that Iwanted to start a family with him, we practically lived together from day one! Then in September 2009 we had our precious son Jacob. I felt like the luckiest woman on earth! Ben and I started planning to marry and grow our family. However...
My health slowly had declined over the year following giving birth to Jacob in September 2009. I felt that I never fully recovered after having Jacob and over an 15 month period was mis-diagnosed with a range of things including exhaustion, IBS and post natal depression (twice!). However I never took the anti depressant pills, I was certain I wasn't depressed I was so happy but just exhausted all the time! I was convinced there was something wrong with me and it was so frustrating not knowing what, I was so tired that Even with a good nights sleep I couldn't get up in the morning to take care of Jacob when Ben went to work, I'd stay in pyjamas all day. Ben did all the night feeds, I was just at my wits end and it was really causing a lot of stress at home. However it wasn't long before things got worse, later that year in November 2010 I started to lose the feeling and co-ordination in my right arm, and it would twitch whenever i yawned which prompted an urgent MRI scan at the hospital...
The results arrived on Christmas Eve 2010 and shattered our family. I was diagnosed with a low grade Brain Tumour in my left frontal lobe (in the motor/pre-motor function area) which we later found out was a Grade 2 Oligodendroglioma. I was put on "watch and wait" protocol at Kings Hospital. Unfortunately epilepsy followed in february 2011 starting with a Grand Mal in my sleep and then focal seizures in my right side (three siezures an hour 24/7!) it took so long to get these under control I was bed bound for weeks, being unable to care for my son made me feel so depressed, I felt like my life was slipping away, no words can describe how much this news and period of time affected us as a family. As the seizures had got so much worse my MRI was brought forward a month to April and it was bad news, the tumour had become more agressive and was enhancing in a small area. A biopsy was performed and revealed that it was now the most agressive type of (grade 4) brain cancer, a Glioblastoma Multiforme (with oligodendroglioma component). Not only is my tumour inoperable because of its size and location but my oncologist made it fully clear that therapies available to me can only at best slow down the growth of my tumour.
However my fiancée Ben and I felt we couldn't accept that there were no other options. From the moment I was diagnosed in Dec 2010 Ben spent many hours searching for another answer. He read book after book and made many phone calls to clinics all over the world. Until one call put him in touch with a clinic in Houston, Texas which has a treatment called "Antineoplaston" therapy which is still experimental and in FDA clinical trials (now at phase 3 for brain stem glioma) and unfortunately because of the economic situation (they are not a multi billion dollar pharmaceutical company) is self funding.
The treatment looked very controversial, so Ben got in touch with the clinic and spoke to a number of past past patients to hear their experience, some of whom were now cancer free after beating their tumours many years ago.
According to our own research we felt this had the potential to be very effective against my type of cancer without harming my body, therefore I decided this would be the path I wanted to take.
Starting in May 2011 I was prescribed 6 weeks radiotherapy at the royal marsden coupled with Temozolomide chemotherapy. I completed the radiotherapy course but had to stop chemo after just a few days because i had an allergic reaction - it made me so sick and gave me a really bad rash. I had a MRI scan after radiotherapy In July and i was told my radiotherapy had failed because the tumour has grown rapidly throughout the treatment. It was so agressive that it had tripled in size in just a 13 week period. The doctors were very honest, I couldn't continue temozolomide cycles now because I was allergic to it. So I was told there was nothing else for me but palliative care and that I would be back on the "watch and wait" protocol of a scan every 3 months and given a prognosis of 6-18 months by my oncologist.
My original oncologist was against my decision to go to America for this treatment because it was controversial and not yet approved by NICE and as standard care by the NHS. Despite this I really felt that the antineoplaston treatment was what I wanted for my body and because this treatment was my own personal choice I felt very confident too, almost empowered. I was therefore transferred to another oncologist who was willing to take me on at St Barts in London.
Unfortunately as this experimental treatment is in a private setting it is not available via the NHS so we have had to pay for this ourselves, the cost is approximately £60-90,000 per year and most patients will require anything from 2 to 4 years treatment.
Given my situation we felt we had nothing to lose, but we don't have this kind of money so Ben and I started "The Hope For Laura Fund". We started fundraising and have been astounded by the generosity and kindness of the general public. Since starting our campaign at least 5000 people have donated to help pay for my treatment and we have now raised £85,000!
I travelled to the Burzynski Clinic in Houston, Texas at the end of July 2011 to start Antineoplaston treatment and for Ben to be trained on administering the medicine by the doctors at the Clinic. The doctors were completely honest with me, they said they won't know IF or how quickly I will respond until I'd been on treatment for at least 8 weeks. We spent three weeks there and then came home and have been continuing treatment (administered by Ben with very close direction from the clinic).
I have now been on antineoplaston therapy since the 8th August 2011. The side effects I have suffered are tiredness, a skin rash which subsided after a few days when I began treatment and a severe thirst! The medicine is rich in sodium and i have to infuse 2 litres of it daily (a dose which lasts 90 minutes every 4 hours 24/7) so I drink approx 5 litres of water daily. This is a very full on treatment, it isn't making me feel ill but while the pump is running it does affect my day to day decisions like for example going shopping or Ben is driving us to see family far away I need water to drink and a toilet close by! I am carrying around an infusion pump all day connected to my Hickman line in my chest. It's like having another baby!
To be honest though, its really worth it, i wont be connected to the medicine pump forever! I have an MRI scan at a private hospital every 6 weeks. When we came home in August it took me until the middle of October to slowly increase my antineoplaston dose up to "maintenance dose" - this is the dose that Dr Burzynski deems is most effective for my body weight.
Then six weeks later on the 29th November 2011 scan my tumour started shrinking, by 36%. On the 1010th January 2012 I had another scan - 56% tumour decrease! I just had a scan on the 21st February and it was even better news - 77% tumour decrease! The tumour is enhancing so much less now, it seems to be disappearing so fast!
In the meantime my epilepsy has lessened, my right arm and hand is no longer parilysed (because the tumour is so much smaller) and I have so much energy I can bathe my son Jacob, play with him, and do all the things a normal mum does- things I never thought I'd ever be able to do. I even get up in the morning before Ben and Jacob now!
The rate my tumour was growing back in July last year, I shouldn't be here right now let alone getting better. I exhausted all the standard options available to me, then stepped outside the box. This journey has given me hope that one day I will be tumour free.
So, If anyone was to ask me have I got any regrets or would I change anything? No. I think having this illness has re-defined who I am and made me a much stronger person, it's been the gift that's taken so much yet given me so much too. This has been the same for all my family and friends who have shared my journey through thick and thin.
We appreciate every minute of every day. Who knows what tomorrow holds?"
Laura Hymas x
Linda - son diagnosed September 2008
Grade 2 ependymoma, surgery 2008, radiotherapy 2008
"I am Mum and carer to David b.12.12.1979.
David has an ependymoma grade 2, 4th ventricle. He was misdiagnosed, early September 2008, by nine doctors at our local hospital (still makes me angry!) and finally diagnosed by one doctor at a different hospital on 11th September, with surgery on 15th. He then had 6 ½ weeks radiotherapy from end of November to early January 2009.
What has enabled me to cope? Hard one. There are two options - you either cope or you go under - and you cannot go under so you just cope. Inspiration? David's bravery - he never once moaned or complained 'why me' - so how could I? He has been my inspiration.
Some advice I would give to somebody else in my position is to take life one day at a time - don't don't try to 'read' the future. Enjoy 'Now'.
My Favourite Quote? Maybe - I don't know who said it - 'Happiness is a decision you make.'"
I'm a member of the online support group if you'd like to get in touch with myself or other people going through a similar situation.
Patrick - Diagnosed July 2011
Mixed (Grade II and III) Oligoastrocytoma
Today I complete one year since I woke up inside an Airport Ambulance on my way to the hospital. This one year has been the scariest, most intense and fulfilling year of my whole life.
I have learned more about myself and life in general in one year than I have learned throughout my entire journey on this planet. After thinking about what to write to "celebrate" my first birthday with brain tumor I decided to share the lessons I learned in this intense year. These are not set in order of importance but they are all important to me.
1. The Importance of Faith - I used to think of myself as immortal. Being closer to death made me as close to life as I have ever been. Life is a miracle and the sequence of events that led me to write this can only be explained by God's desire for me to be here;
2. The Importance of Family - Nothing has been more important through this journey than having the comforting presence of my family. If I needed a strong reason to fight for my life they have given it to me, and the relentless optimism with how I face my condition is only possible because I get re-energized every time I see the smiley faces of my daughters when I get home.
3. The Importance of Friends - I have always kept a strong connection to my friends. The love and support they have given me has just been overwhelming. The way in which my wife and my College friends sent me to France for surgery has simply been the most incredible demonstration of affection I have ever received and I will be eternally grateful for the energy boost I got from it, not to mention all the incredible messages and support from all the friends I made in the US and the new friends I made at work in Brazil, who have been unconditionally supportive.
4. The Importance of Fellow Brain Tumor Warriors - When I was at my lowest point right after being diagnosed I was picked-up from the ground by complete strangers. Liz (Liz Army), Jim Hewitt (RIP brother, I have not met you but you have helped save me), Scott Vickroy and others I have met through the Internet helped me understand that I might still have a lot of life ahead of me. While none of us are exactly sure about how much, we all ought to live life at its fullest until our time comes.
5. The Power of the Digital World - the Internet has helped me connect to very important people, has given me access to scientific papers that have helped me make critical decisions with the help of my doctors and has enabled me to help others, the original intent of this blog. I believe we are entering an era where people with common interests will finally be able to leave their differences behind and connect to work for the common good. We ought to leverage the knowledge sharing power of the Internet and digital information to accelerate the scientific gains in the fight for a disease free, long and great life for Humanity.
6. The Importance of Public Health Care and NGO's - I realized that there are things we need to socialize in order to create a strong society. As the IRS says in front of its building, "Taxes are the price we pay to live in a civilized society". I was saved by the Brazilian Public Health Care System, where I was diagnosed and which now provides me with "free" (I do happily pay taxes) chemo drugs, and by the French Public Health Care System, where I was operated at a significantly lower cost that it would have cost me to be operated in Brazil, even with Insurance. After reading stories about the personal financial havoc that Cancer can cause to people in the US I had to rethink my views on Public Health Care. Public Health Care is bad until we find ourselves caught in the sad side of the debate. Another incredible source of help, particularly information, have been NGOs like Astrofund and The American Brain Tumor Association. We should all be grateful for the tireless work of so many volunteers who dedicate their lives to save us.
7. The Liberating Power of Knowledge - Brain Tumor has kept me away from my old passion, triathlon, and I had to find a new outlet for my energy. I have been reading more that I have ever read in my whole life. My father has always been a role model, a self-made man that reads an average of 3 books a week and who instilled in me the passion for knowledge. I have never studied so much since I was a student, and I love every new discovery I make, from the History of Cancer, the History of Medieval Europe, Capitalism and the power of Democracy combined with the Rule of Law. I am now reading a book by Fernando Henrique Cardoso, the Brazilian President that transformed this country into what it is today. His "Brain Tumor" was exile. A feverous Brazilian, FHC was extradited during the Military Government and risked his life to come back at age 37 (my age at diagnosis) to help fight for a new Brazilian democracy. His defining characteristic is his focus on the present with a relentless optimism and vision of how we can make the future better, because the future will always be different from the past.
8. Dealing with Suffering - I had always been a "chicken" when it came to dealing with bad news, such as death and disease. I have learned to live with both in a way that continues to surprise me. One of the first things I did to "test" my brain after surgery was to speak to unemployed executives going through Out-Placement at my father's office. The topic was "Every Executive has his Journey in the Desert". The types of journeys included things such as being laid-off, going through divorce, going out of business and losing a loved one. I was there to talk about dealing with a challenging health condition, and this was set to help me understand how I would react to public speaking after surgery, as I knew I had a big one coming at my real job. It was the best feeling ever, I was fine to speak in public and most importantly was finally able to empathize with people that were also in very challenging situations. Having Brain Tumor invites people to talk about their problems, and the advice I always give is the same Winston Churchill gave England during the Second World War: "never give up, never, never, never!" Everything will be fine in the end, if things are not fine you have not reached the end.
9. The Importance of Priorities - Life is too short and unfortunately we cannot do everything we want. In order to enjoy all aspects of life, from family, friends, work and personal hobbies, we need to set limits, or one will take over the others. We will never have enough time to do everything we want, so being choiceful about where to invest our time is critical to a fulfilling life.
10. The Importance of Curiosity - Never take answers for granted, often times things are done in certain ways due to a sequence of events rather than because it is the best way to be done. A mind that is focused on making things better will always find opportunities for improvement, even if you are an Engineer in search for answers on brain tumor. If you can't find an answer remember that Human Progress has only been possible because some people decided to never quit until they found answers to their questions.
Thank you all for the support and love given to me, I hope these thoughts help me give a little bit back to you for all you've given to me in the past year.
Rekha - husband diagnosed February 2004
Craniopharyngioma, surgery 2004
"My name is Rekha and I was introduced to brain tumours by my husband Vijay in Feb 2004. This was after prolonged illnesses that nobody could diagnose and failing eyesight, which finally led to the diagnosis of Craniopharyngioma. Vijay was 34, and I had just given birth to our daughter. Our son was 5. Vijay, the children and I have always believed that we will survive...and here we are, bruised and battered, but not ready to give in. I am a healer, a life coach with the International Coaching Federation, a meditator and a vegetarian. Vijay is a hero and an accountant.
When Vijay was diagnosed with a rare brain tumor (Craniopharingioma) in March 2004, he was 36. Our son was 5 and I had just delivered our daughter.
The diagnosis followed months of illness and an ominously failing eyesight. Within two weeks of the diagnosis, Vijay had to be operated upon. For twelve long hours, he fought under the surgeons knife to keep himself alive. "I will come back" he had told me the night before "Just hang in there"...and so I did.
When I was finally called in by the surgeon, Vijay lay with tubes collecting vials of blood from all over his head. Sophisticated, expensive looking machines were strapped to him. Hardly breathing myself, I looked to his chest ...was he breathing? My eyes filled up as I bit my lips fighting hard. "The operation has been a success. We have got all the tumor out. He should be Ok in a few hours" said the surgeon. I wasn't listening..."Water" a very weak voice said. I jumped to grab a bottle. "Just give wet his tongue with ice" said the surgeon, as he walked away. In the triumph in his gait, I realized for the first time that my husband would live.
What followed was a rickety ride. Vijay was determined to live. He battled an increasing body weight, aching joints, insomnia, and sleep apnoea as he tried to live. He sought security in work, and plunged into it with as much strength as he could. There were said and untold biases at work and Vijay was not given the work and indeed the position that he was promised. He tried to convince his employer by working harder each day, each hour, each minute...I only prayed for him to be at peace.
We moved countries in the autumn of 2005. This was a new start ...and we were determined to be happy...no matter what. Sure enough, our resolve was brought to test. In July 2006, Vijay was hurriedly summoned by his consultant locally who informed us of a recurrence. Our children now 7 and nearly 3 played outside the consultation chamber. We were given the names of people who treated these tumors and asked to make contact urgently.
I was in December 2006 that Vijay was operated upon again. "Hang in there Vijay" I remember saying to him the night before. My world was once again falling apart, and I could do nothing but bear the pain. Once more I found myself sitting outside the operation theatre in agony. "Prove to me that you exist. Prove to me ...prove to me" I kept arguing with God. Another woman sat a little further away, sobbing. Her world like mine was on fire and we stood watching helplessly.
"A complicated case, but I think I have managed to get all the tumor out. He should come round in a few hours with a headache. I have told the nursing staff" the surgeon said. I thanked him mechanically. Vijay took more than a few hours to come around. He had had a stroke ....
It affected the right side of his body, his short term memory, his speech and left him with a third nerve palsy. I just felt raped by life ....and now there was a husband and two children to look after in a foreign country.
Some family pitched in , the employer made some noises, and others just sought gossip. I now understand how tragedy is sensationalized. Moved from hospital to hospital and then sent home when the insurance ran out to wait for a NHS bed, Vijay continued to live. The three year old did not understand why her daddy was different now. The seven year old did not understand why his daddy had to be ill. The thirty five year old did not understand what to do next.
But we all pretended to live a normal life. My son struggled at school. I struggled with betrayal and hopelessness. Vijay struggled to win. He trained his body and his mind. We worked on his speech and his cognition. We acknowledged and praised each other every day. We grew increasingly closer. Every small step was a huge victory. We gave our days a structure, and a routine to work with. We gave our nights the comfort of hope.
Vijay underwent Radiotherapy in June 2007. The surgery had not got all the tumor out as I had been informed, and the residual had to be treated with radiotherapy. Six weeks of radiotherapy, and we still held hands on the way to and on the way back home.
Vijay went back to work partly because there was no other way to support himself and us in a foreign land. Once again, it was the same story. Lack of understanding of brain tumor and a stroke leading to lack of empathy . Once again, Vijay stood his ground and reaffirmed his commitment to deliver his best . In the time of "Leave" that followed Vijay worked harder than ever to defeat his circumstance. He kept himself mentally alert and physically fit. He fought his weight and managed to keep it under reasonable control. He familiarized himself with the history and the of the land that he now lived in. He started to learn Sanskrit, and to play the Piano.
In the past few weeks Vijay has returned to work again in a part time capacity. I can only pray that there is compassion and sensitivity to his "Being" at work. In the meanwhile, Vijay continues to work hard, and is determined to find expression to his skills and talents in all that he does.
He is on his way to finding the meaning of life...
For him and for all others like him, please let us put our hands together and Bless.
Should you like to contact Vijay or myself for anything at all that we could be with you for please send a message to us via the Astro Brain Tumour Fund website."
Sarah - Grade 2 Oligoastrocytoma
Diagnosed April 2009
I was diagnosed with a grade 2 oligoastrocytoma in right front temporal lobe after 2 grand mal seizures in April 2009 - otherwise healthy history with migraines around the time.
I have had 2 craniotomies April 2009 (biopsy) and subtotal resection (October 2009). Am managed on Epilum and Keppra and have 6 monthly MRIs.
In February/March 2011, I had five and a half weeks (52 Gry) radiation. My tumor is shrinking and have about 13mm to go.
My inspiration is my 4 year old daughter who keeps me living in the now and reminds me to make the most of every moment. Also the many blogs and stories I have heard of people living with tumors well past their predicted life expectancy (some by up to 30 years or more)
My advice to newly diagnosed is to do your research and ALWAYS seek SECOND even THIRD opinions and to stick with a Doctor who has a positive outlook
My passion is process art and I have trained to facilitate classes for others since diagnosis – it is such a therapeutic outlet and is so powerful in gaining subconscious insights into yourself and to help process trauma etc.
I have a blog and live in South Africa and am 37 years old.
Sophie - diagnosed September 2014
Grade 1 pilocytic astrocytoma
My daughter Sophie was diagnosed with a grade 1 pilocytic astrocytoma at 4 years of age in September 2014. The tumour is centred in the Medulla and extends in to the Pons and Upper spinal chord. Diagnosis followed CT, MRI and surgical biopsy in September, but she had been suffering from acute respiratory problems and latterly apnoeas (misdiagnosed and treated as viral asthma) for the preceding 18 months.
Following diagnosis, Sophie started the standard LGCC chemotherapy with carboplatin/vincristine, which she followed for 10 months before suffering anaphylactic reaction to the carboplatin. The regime was then changed to cisplatin/psychlophosphamide/vincristine, though this was not tolerated well due to the amount of IV fluids given during the infusions exacerbated the chronic breathing problems.
Despite 12 months of the chemotherapy the tumour had continued to grow by 25% and we ended October 2015 in complete respiratory arrest (hypercapnia) and admission to PICU. Following this a ‘life saving’ operation to debulk the tumour was conducted at UHS Southampton in early November, resulting in about 90% reduction.
Sophie is still bipap ventilator dependent, with a tracheostomy and NPO due to swallowing deficiencies (bulbar palsy) resulting from the tumour. She has not walked since early September 2015 and has limited speech (only when trachi cuff is deflated). She was discharged from hospital to home yesterday, but is under continuing treatment and care with Oncology, Long Term Ventilation, Speech & Language and Physiotherapy Teams. She resumed chemotherapy in March and is currently receiving weekly Vinblastine IV – MRI results at the end of May are positive and show a further 8% reduction in tumour size.
Overall we have received an excellent standard of care and monitoring through the last 21 months, but feel that an earlier diagnosis should have been possible, given a series of acute admissions for respiratory problems. We also feel that once diagnosed with the tumour, closer observation of her respiratory problems should have predicted and prevented the hypercapnia leading to respiratory failure.
Sophie is now 6 and is bright and happy and looking forward to resuming school in September. Though we fully realise that we are facing ongoing chemotherapy and the likelihood of more radical surgery and radio therapy in future. We hope that in the meantime we are able to improve her mobility, swallowing and even perhaps reduce her dependence on ventilation support.
We are be pleased to share this story and our experience to help raise awareness to aid earlier diagnosis.
Steffanie - diagnosed January 2008
Grade 2 astrocytoma, surgery 2009
"In January of 2008 after a bout with strep throat, I started experiencing changes with my vision and severe, debilitating headaches. I've always had headaches, but nothing like this. It was determined that I had had a very rare side effect from an antibiotic, but through an MRI because of it, my doctors found a brain tumor. The tumor was in the right insular area, and they believed it to be a low-grade glioma, most likely an astrocytoma (Grade II.) It was recommended that I follow a 'watch and wait' approach.
Being a 34-year-old mom of two young children, sitting and doing nothing was not an option for me. The neurosurgeons where I live did not want to operate as the tumor is deep within my brain and in a sensitive area. The kicker to my story is that my grandpa passed away in 1992 from this same type of tumor, but his tumor was a Grade IV Glioblastoma Mulitiforme.
So being the control freak I am, doing nothing and waiting for a ticking time bomb to explode was not an option for me. I joined the Astro Fund online support group and read, read, read. I gathered information on who the best doctors in the nation were, and in December 2008, I sent my records to Dr. Mitchel Berger at University of California-San Francisco (UCSF). He is one of the best doctors who operates often in the area of the brain where my tumor is located. Compared to the 10% risk of permanent damage that doctors where I live gave me, he gave me a 1-1.5% risk.
On June 29, 2009, my family and I traveled from our home in Illinois to UCSF for surgery with Dr. Berger. After 8 ½ hours of surgery, he performed a gross total resection of a Grade II Oligodendroglioma. I didn't require any radiation or chemo after surgery, so with regularly scheduled MRIs, I am now on the Watch and Live protocol.
If you'd like to chat to me, you can obviously find me through the online support group!"
The picture in front of the Christmas tree is from the Christmas before I had surgery (Christmas 2008). Obviously one is of my incision right after surgery in June 2009, and the other is of me and my children three months after surgery
Tom - diagnosed June 2007
Grade 2 oligiodendroglioma
I became the pastor of a fairly large church at the age of 30; the first year was going well, but it was hard work. I was the father of two young sons with another on the way. Our house was being extended. All in all, I had plenty of reason to feel tired and pressurised.
So when, while working late at night, I found that for a few minutes the words would swim in front of my eyes, there was no serious cause for concern: just another stressed-out pastor! The locum GP agreed and gave me sleeping pills.
Even when it happened mid-sermon, and I had to take a breather while members of the congregation sang, prayed and speculated – well, we were not too worried. Some sort of panic attack, no doubt; not pleasant, but not a big problem. A different locum GP agreed and gave me beta-blockers.
Even when mid-sermon breathers became the norm and folk were running sweepstakes on how long I’d last that Sunday – well, I won’t say we were not concerned, but more about my psychological state than physical! Even when it happened during conversation and phone calls and when reading books to the children. After all, I didn’t get headaches and it was very intermittent – I’d go for months without symptoms. And another doctor agreed (BUPA this time, thanks to the deacons) and recommended breathing exercises.
But when I collapsed in the shower on Christmas Eve 2006, then we really did worry, and so did my GP. But six months later, when I had the MRI scan, I was feeling much better and fully expected to be sent home as the pathetic malingerer I considered myself to be.
And so, when the surgeon said that I had a large brain tumour it came, shall we say, as rather a blow. It was inoperable and growing at an unknown rate like a furry biological pom-pom in the part of the brain I use for reading, speaking and thinking (“does your work entail much of those things, Mr Chapman?”). We can help you! We can give you radiotherapy! You might even last three years! Oh, and you can’t drive home.
Well, perhaps it wasn’t exactly like that, but it’s a fair enough summary. And I can report that yes, being told at the age of 35 with three young children that your time is numbered on the fingers of one hand is as unpleasant as you imagine. The effect is visceral, a physical kick in the guts. I am not inclined to remember much of the next few months.
Radiotherapy is not usually particularly unpleasant, even on the brain. It makes you dozy, dopey, deaf and gives you a weird hairstyle that attracts ridicule from kids in the street (so what’s new?), Perhaps the most poignant moment is when, once you are strapped in to your radiotherapy mask – a perfect made-to-measure Perspex mould - the radiotherapists leave the room and it’s just you and the gamma rays. Other people watch on the screen, but they can’t come in; you’re on your own.
However I won’t forget every aspect of summer 2007; for example, the chicken - farm reared, corn-fed and cooked by my mother with love in a sunny moment between the emotional thunderstorms. With my steroid-enhanced appetite and intensified sensitivities, it was the most delicious thing I have ever tasted; I gnawed every shred from the carcase. And my point is that, even in times of the most miserable desolation, the Lord can provide wonderful and unexpected oasis. At the time, that chicken was perhaps the best spiritual encouragement I could have had received!
After an initially good response to radiotherapy, five years passed relatively smoothly. However, following some cracking headaches, it became clear by early 2013 that the tumour had recurred in a more aggressive form. We were told that I would be fortunate to live another 18 months.
It was a bad time. We have three boys and a little girl who has just turned three and is too young to understand. The boys are 14, 12 and 10 so we had to explain what was happening and that there was a good chance that they wouldn't have a dad for very long.
The Doctors at Addenbrookes Hospital in Cambridge encouraged me to consider the option of surgery alongside chemotherapy. While there was a real risk that I would lose up to 40% of my eyesight and that it wouldn't be possible to remove the entire tumour, surgery would make me more comfortable and the tumour more accessible to chemotherapy.
I originally thought no, but over time was persuaded that perhaps it was the best thing to try - it gave us the better chance for God to make a difference. And indeed He did!
I underwent the operation in July 2013 fully expecting to wake up with half my vision, but I was amazed to open my eyes and see better than before. All the visible tumour and mass had been removed, including parts the surgeon had thought couldn't be. And the biopsies indicate that there is a good likelihood that the remaining cells will respond well to chemotherapy. And it was grade three, not four as the surgeon suspected!
Any one of those things would have seemed a remarkable blessing and answer to prayer, but for all to have come good is staggering. The doctors now say that instead of keeping me comfortable for 18 months they are looking to keep me alive for years.
But it is not the results of the surgery that I cite as the greatest miracle. It is the sense of peace Suzanne and I had in the month beforehand despite knowing the risks and prognosis.
It had been a pretty tormented time. But when we felt it was right to go ahead with the surgery we suddenly found ourselves in a time of great peace. That peace came from knowing Jesus had died for me and I had a relationship with God that would last forever.
I am conscious that many people don't find a tangible answer to prayer for physical healing, but I would counsel those facing cancer to seek it and crucially not to give up. I would also encourage others facing cancer to embrace the opportunity to look beyond this life and focus on what really matters.
I am back at work. I currently struggle to read aloud and so find preaching a challenge, but one which I hope to overcome in the future. For now, I am looking forward to enjoying Christmas and life beyond without a dark cloud over my head.
I would like to say a big thank you to the work of Astro Brain Tumour Fund and everyone who gives to and works for it. The support of the Ketogenic diet has been very helpful in understanding it and keeping me going. It is impossible to say with objectivity what the benefits have been but I certainly feel better most of the time than I have done for years (and that is less than 6 months after surgery and midway through chemotherapy).
I am happy to be contacted by email at firstname.lastname@example.org